Chemo is finished!!….so now what?

As many of you have probably heard, chemo is finished. The doctors have determined that Jacobs body is too worn out, that any more chemo would only be damaging and toxic to him, specifically to his kidneys. This past week, Jacob was admitted to Abbotsford Hospital after developing a few concerning symptoms. These progressed through the night and into the next day which got us an ambulance ride to Childrens Hospital. After many tests, an infection was found and he was started on antibiotics, which quickly started helping him.

Jacob was supposed to start chemo again tomorrow, round 18, the final round, which we were gearing up for mentally. However, our oncologist had a meeting with us last Thursday to inform us that after much discussion, had come to the conclusion that Jacobs body cannot take any more chemo. This discussion had come up after Round 15 already, as we started noticing a decline in Jacobs kidney function. We decided together to press on, taking it one round at a time and checking his kidneys after each one. My concern then that I expressed with not finishing chemo was that it Jacob ever relapsed, would I struggle with the fact that he did not complete every round. Would I be able to forgive myself for not pushing harder to get every last drop possible in him to kill the cancer. And although chemo has come to an end one round early, we trust the doctors and their decision. Jacob has completed 17 rounds of intense, high dose chemo – more chemo than a young man should ever endure, with a leg amputation in the middle of it all. And endure he did, with courage, strength, bravery, and a quiet trust in God and full acceptance for Gods will in his life.

So now what? This is how we are left feeling. As quickly as we were thrust into the world of hospital stays, surgeries, chemotherapy, bloodwork and blood-counts, constant monitoring, daily support from hospital staff and families we had met on the unit – we are just as quickly walking away from it. Is the whirlwind we called chemo really over? Did we actually go through all of that? Is end of treatment really here? It’s a strange feeling to walk out those hospital doors – a mix of excitement, sadness, fear, hope, pride for Jacob and all he has accomplished – but overall, feeling lost.

From here, Jacob will have end of treatment scans and testing in the next couple weeks. PET scan, MRI, CT, X-Rays, heart, kidney, and hearing tests. A date will be booked for surgery to remove the port in his chest. After that, he will have scans every 3 months to monitor. This will most likely be one of the hardest parts for us. Waiting for the next scans. Dreading them, and hoping to never, ever hear the word relapse. Living in 3 month increments and desperately praying and hoping that the scans remain clear.

Rehab is in limbo for now as the physiotherapist at GF Strong who works with rotationplasty is off for awhile for a back injury. Once rehab starts we will again be spending much time away from the home. For now, we will be trying to find a new normal – because the reality is we cannot go “back” to our normal as it was before. We are all changed because of cancer.

With sincerity, thank you to each and every one of you who has taken time to pray for our son. For the support we received in various ways. The last 11 months have been much more bearable because of the prayers, love and support poured out on us. We are beyond thankful for all of it. God has held us up, and sustained Jacob more than we could have possibly imagined at the beginning of all of this. We ask for your continued prayers, as this road is not over.

I will end off sharing a letter I wrote to Jacob in the last hours while we were in the hospital together, hoping that it would be the very last best wishes email he would ever receive in the hospital as an inpatient fighting Osteosarcoma. It “sums up” the last 11 months in a few paragraphs, and our hopes for Jacob in the future.

My dearest Jacob, a brave fighter and warrior.

You did it Jacob. You finished 17 rounds of intense and heavy chemo. When we started all this, it looked unbearable. Yet, by Gods Grace, and your strength and determination and acceptance, it has been bearable. Every step, I have been so proud of you. Your brave and contagious smile that has touched people in all parts of the world. Your determination to never give up. The remarkable way you have never once, not a single time, complained and felt sorry for yourself. You are a true champion, and with your quiet faith and courage have inspired so many others. God is mightily at work in you. While we won’t understand why this had to happen to you, it is not in vain because you have reached so many through it, and shared Gods love in it all.

I have been honoured to spend every single night with you in the hospital. We didn’t know it would be so many nights, almost 200 nights away from our home…but with your amazing attitude you helped me Jacob, to stay positive and cheerful and accepting as well. We have been a great team together, and I will continue to help you and be there for you every step of the way. I look forward to helping you with rehabilitation and learning how to walk and run and play again. And you WILL do all of those things!!! Together we will process and work through the new road ahead, though at times there will be anxiety and stress. Let’s continue to walk as we have, with courage and faith over fear.

There is nothing that I wouldn’t do for you Jacob and you deserve all the happiness and love that we can give you. You should be proud of yourself. It is a very rare person who can go through what you all have in the last 11 months and do it with the attitude that you have.

I love you, more than you can possibly understand. I am proud to call you my son. I am amazed by you. And I have learned from you. Keep trusting God Jacob. Keep trusting His plan and will for your life. Keep walking this road the way you have – persevering in the hard times, but shining through it.

I look forward to celebrating all the new milestones that are in store for you. And I will continue to pray that there will never be another bag of chemo in your future. Never the word relapse. Always the words No Evidence of disease and I eagerly await the day when we hit the 5 year mark and can say you are cancer free.

With all my love, your mamma bear 💜